Scoliosis & Genetics: Can 23andMe TESTING Provide Info About Scoliosis? (Part 1)

Scoliosis & Genetics: Can 23andMe TESTING Provide Info About Scoliosis?

I recently watched a video from Dr. Mark Morningstar who explained how there are underlying factors that cause scoliosis to happen, and that scoliosis treatment is about more than just treating the curve.  According to Dr. Morningstar there are gene variations involved with idiopathic scoliosis; specific genes that something can be done about from a functional medicine/therapy perspective.  

I recently ordered the 23andMe test kit to go through the process of finding out what my genetic information will tell me about my scoliosis.  When I receive my results from 23andMe I'll email the raw data file to Dr. Mark Morningstar who has about 28 genetic variants he will look at directly involved with scoliosis development.  He runs the raw data through his own software program to create a report (about 40 pages long) that will measure these genetic variants.  The higher the number of these genetic variants a patient has- the more likely they are to have a progressive form of scoliosis.  Patients can schedule a phone review to go over the report. 

23andMe has 2 testing options - one is $99, and the other $199.  You get the raw DNA data file no matter which test you buy, so you can get the cheaper one for this purpose.  They sometimes have discounts.  I was able to purchase my kit on sale for $69.99.  Then it's $99 for Dr. Mark Morningstar to generate his report and go over it with you.

I recorded the process from start to finish of me taking the 23andMe test; going through the steps and highlighting some of their terms if you're interested to see what's involved.

I'll do a Part 2 to share my experience with the remaining steps in this process.  I recently mailed my kit and am waiting to hear from 23andMe.

VIDEO

Going through the process of taking the 23andMe Testing

Dropping off my test at the post office.

VIDEO

Dr. Morningstar speaking about Scoliosis and Genetics

To learn about other testing and supplements available through ScoliSMART you can check out ScoliSMART Labs

ABOUT THIS BLOG & OTHER LINKS

Subscribing to this blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at:
www.facebook.com/thecrookedlife

To learn about my scoliosis charity:

The Crooked Life Foundation

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com

About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain. I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 

I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!

Observe this --- Wait No More!

The x-ray is reviewed, and the doctor reveals your child has scoliosis.  What do you do?  Many parents probably don't know exactly how to react when those words first collide with their ears.  Naturally, a flood of questions build in their minds, while concern and worry elevate.  What is it?  How is this going to affect my child?  And the question at the top of the list is most likely- How do we treat this?  What can we do to help our child?  You may be surprised at the answer many parents are given, even still today--- which is basically "do nothing,” or in other words - Watch & Wait.  Watch and Wait to see if the child's curve progresses to a higher degree.  If it does progress bracing or surgery may be recommended.

According to the book “Scoliosis and the Human Spine” by Martha C. Hawes, Ph.D., The Principles and practice of current treatment options recommended through established U.S. medical channels are as follows: for Scoliosis of Ten to Twenty degrees ‘observation only’ is recommended.  “This means the child is brought in to see an orthopedic surgeon every three to six months or so to be radiographed until growth stops, even if that means a period of several years.”  If no significant increase in curvature is observed or the curve never increases past twenty-five degrees, then the child is no longer observed, and no treatment is given.  For Scoliosis of Twenty-Five to Forty Degrees, “the child is treated with what is called the ‘conservative’ or ‘nonoperative’ approach which in the scoliosis literature means treatment with an ‘orthosis’ or brace.”  Braces are typically worn around 23 hours a day until the end of growth.  This is done in an attempt to stop further progression.  Scoliosis of Forty to Forty-five Degrees, “if the curvature in a growing child progresses to forty degrees despite bracing, spinal fusion surgery is recommended.”

I'm a big proponent of common sense, and I find this approach lacking in every sense- if you know what I mean.  I don't understand why one should wait to treat a condition until it worsens; as when a condition worsens it gets harder to treat.  It seems to me that a condition would be much easier to treat at onset.  And there are doctors who agree. 

Like Dr. Clayton Stitzel who never recommends waiting and watching, as all large curves start out as small ones. He says, “Scoliosis treatment should be more than just an effort to dodge the knife.  It should be a comprehensive, all out, and genuine effort to help a patient get better.  However, the current treatment model (observation, brace, surgery) simply does not reflect this noble and lofty ideal and is entirely based on preventing the curve from reaching the arbitrarily determined 50° surgical threshold.  Observation is not treatment. It is simply doing nothing and hoping the curve does not get worse.  THIS IS CRAZY.  Do you know what all large scoliosis curves have in common?  They all started out as small scoliosis curves first!  I would submit that a child with a 20° curvature is no less deserving than a child with a 40° in terms of opportunity to fight back against the scoliosis condition and actually get better.”

Dr. Brian Dovorany says, “Ahead of the Curve - is probably the most important thing I could ever say to a parent of a child diagnosed with scoliosis.  Waiting 6 months to determine if the curve has gotten worse is by far the worst and potentially life altering advice a doctor could ever give to a parent whose child has a mild curvature of their spine.  Every day that goes by that child’s nervous system is remaining in an altered unhealthy state of confusion while soft tissue adaptation is occurring which strengthens this asymmetry and promotes further progression during growth.  Exercises that reprogram the child’s nervous system early on can significantly reduce spinal asymmetry and in many cases eliminate scoliosis prior to pubertal growth.” 

Dr. Nick Weddle says, "Parents who have been advised to watch and wait may prefer to take a more proactive approach and treat the curve while it's still small to reduce the chance of progression.  Scoliosis can progress quickly during periods of rapid growth which can cause a small curve to increase to a very large curve (to a size which many surgeons would like to fuse) in a short span of time.  Being proactive can help one stay ahead of the curve."

Me - Age 12  (First Diagnosed)

I was diagnosed at 12 years old.  I watched and waited while my curve eventually progressed to 42.5 degrees and the best a doctor could do for me at that point was to tell me - its best to just live with it!   What good did that do?  So I'm scratching my head and trying to figure out how this approach makes any sense. 

Me - After Watching & Waiting

There are Scoliosis rehab programs today helping kids and adults fight Scoliosis! Early detection and intervention is important as early detection leads to better treatment outcomes.  

So today I say 

Wait No More!

I am a voice of someone who has suffered the emotional scars of Scoliosis, someone who has gone through the pain, someone who has hid behind clothes! Please don't wait!  Treat this condition at its smallest for the biggest impact.  I desire others not to go through what I did for so many years!  

THE GOOD NEWS - today there are exercise based treatment options available to get ahead of the curve and start fighting immediately to reduce and stabilize curvature.

Me - Today (After Treatment)

I'm thankful because I started treatment as an adult 3 years ago, and it changed life for me!  My pain was eliminated, postural deformity and curve reduced, and confidence restored.  I'm so glad I have an option to fight now! This type of treatment didn't exist when I was first diagnosed; if it had existed I'm confident that I wouldn't have had to endure some of the things that I did through the years.  I'm happy that today HOPE exists, and that there will be kids that will not have to go through what I did because of it!

Here are a few of the Scoliosis Rehab Treatment programs available today.  Research them, and find out what’s best for you!  Many of these doctors have free consults to learn more, and discuss your child's specific situation.  

ScoliSMART: http://www.treatingscoliosis.com/
Located: Lititz, PA  -  Green Bay, WI  -  New York, NY  -  Grand Blanc, MI

CLEAR: http://clear-institute.org/
Located: Many Locations (Check website)

Rhino Scoliosis Center: http://www.rhinosc.com/
Located: Wheat Ridge, CO

ABOUT THIS BLOG & OTHER LINKS

Subscribing to this blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at:
www.facebook.com/thecrookedlife

To learn about my scoliosis charity:

The Crooked Life Foundation

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com

About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain. I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 

I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!

Confidently Curvy Scoliosis Fashion Show - Presented by Shae Smith (Miss. Springfield Outstanding Teen 2018)

Shae Smith - Miss. Springfield Outstanding Teen 2018



"Confidently Curvy" Scoliosis Fashion Show Video

I recently had the opportunity to attend the Confidently Curvy Scoliosis Fashion Show in Springfield, Missouri - Presented by Shae Smith, with guest speaker Dr. Clayton Stitzel.  

Shae recently teamed up with Dillard’s and organized the “Confidently Curvy” fashion show featuring girls with Scoliosis, and a special appearance by Dr. Stitzel.  Girls from MO and AR spent the day shopping, having makeovers and modeling.  Shae says, "I want other girls, whether they have a rib deformity, crooked spine, scar or wear a brace, to feel beautiful in their own skin.  Yes, we are unique and battle a lot of pain, but we don’t need to hide it".

This was a wonderful event!  I can personally relate, and love Shae's message.  For years I hid my condition behind baggie clothes - never talking about it!  3 years ago I began treatment and made a statement to - HIDE NO MORE!  

Check Out the Fashion Show Video Here!

Video Interview with ScoliSMART Dr. Clayton Stitzel prior to Fashion show

Before the fashion show I had the opportunity to interview Dr. Clayton Stitzel at The Bass Pro Shop in Springfield, MO. about rehab scoliosis treatment and new advancements in treatment. 

 Shae's Scoliosis Story & Mission

  

From a young age I have been highly involved in modeling, sports and pageantry.  I was always the little girl who hit the stage with a big smile and couldn’t stop dancing.  By the age of nine I was walking the runway, dancing competitively, playing on a traveling softball team, and representing Missouri at a national pageant.  Always active and outgoing, I had so many plans for my future, but at the age of 11 is when I received my diagnosis.  At my checkup I was asked to bend over and it was the first time my mom had seen the rib hump on my back.  It caught us both by surprise!  I was immediately sent for x-ray and told I had a 19 degree thoracic Scoliosis curve. 

I was sent to an Orthopaedic specialist who told me the only thing I could do is wait and watch.  I went about my life as always thinking it was something minor and chances were it would not progress.  Boy, was I wrong!  Five months later I went for a checkup and my curve was now 35 degrees and I was told I had to be fitted for a brace.  I was trying my best to be brave and had the doctor make me a pink brace so that I could show it off, but when that day came I was an emotional wreck.  The doctor put the brace on me, tightened the straps to where they needed to be, marked them with a black marker for me to know where to stop, and I instantly couldn’t breathe.  The tears started slowly falling down my face as I stood there looking at myself in the mirror as though I was watching someone else.  I lost a piece of myself that day and for weeks to come I couldn’t smile or be the bubbly person I truly was. 

Six months into wearing the brace it was becoming a constant struggle at school and with the number of sports I was involved in.  It was uncomfortable at school, I tried to hide it with baggy clothes and I cried every night.  My checkup also revealed that it was only getting worse.  The doctor started talking surgery, but my mom didn’t want to accept that.  If you know my mom, you know she is my momager and always looking out for me.  She went on a desperate search and found a non-invasive clinic called ScoliSMART.  My first visit to the clinic in Pennsylvania to see Dr. Stitzel was three years ago and I still go there for six month checkups.  I have rehab and exercises I perform daily that have kept my curve from progressing even through my growth spurts.  Most importantly, I am myself again!  I am that happy girl that is living out her dream of dance, modeling and competing in pageants. 

I currently have the title of Miss Springfield’s Outstanding Teen and will compete for Miss Missouri’s Outstanding Teen in June.  I have had the privilege of combining my passion of pageantry with my Scoliosis journey to make a difference in the lives of so many other girls like myself.  My personal platform is “Catching the Curve:  Advocating for Early Stage Idiopathic Scoliosis Detection.”  I have spent the last several months making many strides in the State of MO and beyond to increase Scoliosis awareness and help build the self-confidence of other Scoliosis warriors.  I have helped raise money for Shriner’s Hospitals, talked to area schools, visited with Missouri’s Lieutenant Governor, filed Senate Resolution No. 1 for a Scoliosis awareness day in the state, and created a website www.catchingthecurve.com.

I also recently teamed up with Dillard’s and organized the “Confidently Curvy” fashion show featuring girls with Scoliosis, and a special appearance by Dr. Stitzel. We had girls from MO and AR who spent the day shopping, having makeovers and modeling.  I want other girls, whether they have a rib deformity, crooked spine, scar or wear a brace, to feel beautiful in their own skin.  Yes, we are unique and battle a lot of pain, but we don’t need to hide it.  I was that girl and I wish I would have had others telling me that it was okay and to know I was not alone.  My ultimate goal as Miss Springfield’s Outstanding Teen is to increase awareness, encourage parents to check their kids often, know that there are other non-invasive approaches to Scoliosis, and to show other girls that no matter what challenges they have in life, they can still reach for their dreams and they are not alone.  We are stronger together!!

Shae is currently raising funds for The Crooked Life Foundation (charity providing Scoliosis Activity Suits to patients who cannot afford them) through this t-shirt fundraiser. 

 Order or Donate Here

About this campaign

Please consider purchasing a shirt and sharing this inspirational quote with others. We can all relate to this statement in many areas of our lives. You can follow the pages below for updates and you can even see who benefits from your generosity. Marce Kuhns, President of The Crooked Life Foundation, started this mission to help others and we need to keep it going!

https://www.facebook.com/projectsas10/ 

https://www.facebook.com/MissSpringfieldOutstandingTeen2018/

As Miss Springfield's Outstanding Teen, my goal is to advocate for early detection and prevention of progressive spinal deformity. Diagnosed at the age of 11 with Idiopathic Scoliosis, I personally know the physical, emotional and mental effect of this disorder.I have been fortunate enough to find ScoliSMART!! Awareness is crucial, and I am using my platform to be the voice for scoliosis warriors. Scoliosis does not have to stop us from doing what we love and I am living proof. The activity suit allows a kid to still be a kid, and adults to live pain free. Join me and let's help others!!  

ABOUT THIS BLOG & OTHER LINKS

Subscribing to this blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at:
 www.facebook.com/thecrookedlife

To learn about Project SAS 10:

The Crooked Life Foundation's Project SAS 10

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com

About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain.  Also, at 12 years old the brace wasn't exactly great for my self image.  I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 


I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!

The Crooked Life Foundation (Our Story)

The Story 

"What if I fail?"  That's the 2nd thought that rushed my mind as the idea for Project SAS 10 came to me.  The 1st thought was this - "I want my life to have purpose and meaning outside of my circle.  I want to be able to leave this earth someday knowing that I made a difference!  Hoping that there will be people in this world who laughed more, hoped more, and lived better because I decided to step out and be brave."  After all, these things have all been bestowed to me by caring people, and I desire to deliver to others that same life changing HOPE!  Prayer for change is common. We have the power to create change, and I think we are all the answer to someone's prayer.   

Though I got the idea for Project SAS 10 in late 2016/early 2017 it wasn't until May of 2017 that my husband and I officially announced the Project - just in time for Scoliosis Awareness Month in June.  Here's the video we posted to announce Project SAS 10.  My husband and I committed to provide 10 Scoliosis Activity Suits to patients in need as we saved and raised funds. We estimated it to take several years to provide the 10 suits.   

      

Well, we stepped out in faith and others have joined us to provide HOPE. In 2017 we were able to provide 5 suits.  We just gave away 2 more suits in February of 2018.  In 9 months we've been able to giveaway 7 suits,and we plan to keep going and see how many people we can help.  

In August 2017 we decided to turn this into a Non-Profit Organization and got our incorporation.  Just recently in December 2017 we received IRS approval and are now a 501C3 Non-Profit Organization called - The Crooked Life Foundation. It's work for certain, but I have the passion.

My pain became my passion.  I was diagnosed with scoliosis at 12 years old.  I watched and waited. My curve eventually progressed to over 40 degrees as an adult.  I visited several orthopedic doctors throughout my journey who advised me that it was best to just live with it.  I wasn't presented with any treatment options. I was very self-conscience, in pain, had a noticeable postural deformity, and feared for my future.  I felt helpless for over 20 years!  Then 3 years ago my life changed when I found a rehab based scoliosis treatment program. I had HOPE! It's such an amazing feeling, and I desire others to experience this same HOPE!  

My husband and I are moving forward with a vision to help bring HOPE to people's lives.  Hope is out there, but some people do not have the finances to access it.  One at a time we will bring change!    So, we move forward with passion, and as others see our vision and join with us - we will begin to shine brighter and make a larger impact.

Marce Kuhns

President of The Crooked Life Foundation


Mission: To provide HOPE to scoliosis patients who otherwise cannot afford treatment. Currently, we are accomplishing this by using donations to provide Scoliosis Activity Suits to patients who cannot afford them.  

How: Once enough donations have been received to provide a suit to a scoliosis patient in need - we announce it on our Facebook page Project SAS 10.  Scoliosis patients are then able to submit their story/information to be considered.  A patient will be selected and notified by the date indicated in the announcement.  Expenses for the Activity Suit, x-ray, consult, doctor's visit are covered.  Travel expenses are not included.

5 Scoliosis Activity Suits Provided in 2017

As you can see the majority of the donations benefit our mission.  The expenses are minimal, such as required filing fees for Non-Profits, and the PO BOX to accept donations by mail.    

Ways to Donate: 

www.PayPal.Me/thecrookedlife

Note: When donating through PayPal please make such to include your name/contact info in the note section if you would like a receipt for U.S Income Tax Purposes at the beginning of the year.

By Mail:

The Crooked Life Foundation
P.O. Box 11515
Raytown, MO 64138


FOLLOW US:

We post updates on our facebook page each time we giveaway a suit, to give updates on how close we are to providing another suit, and to notify scoliosis patients when they can submit their story/information to be considered for a suit. Follow our Facebook page here- Project SAS 10




  

                 

Adult ScoliSMART Activity Suit Infographic

ScoliSMART Study Infographic created by Treating Scoliosis (ScoliSMART)

ScoliTalk with Guest Dr. Dovorany - Topic: Auto Response Training

ScoliTalk with Guest Dr. Brian Dovorany

Topic: Auto Response Training

A special thanks to Dr. Dovorany for this interview about Auto Response Training. Watch to learn about this treatment approach - how it works, how to find out if you're a good candidate, learn about treatment outcomes, ect.  Also, at the end of the interview I asked a question that many have inquired about - WATCH THE YOUTUBE INTERVIEW BELOW TO FIND OUT!

Auto Response Training is one of the core components of the ScoliSMART program.  In fact, Dr. Dovorany invented the Scoliosis Torso Trainer™ which is being used in over 50 clinics around the world. 

  
Dr. Dovorany received his Doctorate in Chiropractic from Palmer College of Chiropractic in 1997.  He specializes in the reduction and stabilization of scoliosis. He's trained doctors from all around the world on reducing and stabilizing scoliosis in adults and children by effectively recruiting new muscle memory using custom neuromuscular training systems. 

According to Dr. Dovorany, "the Scoliosis Torso Trainer was invented in 2011 in an attempt to create deep layer intrinsic muscle adaptation for thoracic primary curves. The patient reacts to the devise through subconscious postural righting reflexes; since there is no counter compression under the left arm it allows tremendous elongation ability and also decreases spinal and rib cage rotation."  The Torso Trainer was presented at the 2013 SOSORT orthopedic convention.  

Here is an x-ray comparison to show how my spine reacts with the Torso Trainer.

Left: Pic of x-ray without torso trainer,  Right: Pic of x-ray wearing torso trainer

For many years I didn't have any treatment options available to me; I'm ecstatic that there's now a means to fight and want others to know - THERE IS HOPE!  

I hope you enjoy this episode of ScoliTalk.  

ScoliTalk - Episode 1

Subscribe to ScoliTalk on YouTube

An additional video of Dr. Dovorany discussing Auto Response Training.




www.scolitalk.com

Sharing my journey on Facebook at The Crooked Life

Subscribe to ScoliTalk on YouTube

INSIDE LOOK: My ScoliSMART Wisconsin Experience (Video)

Last week I spent time in treatment at ScoliSMART Wisconsin.  It was truly an amazing experience.  I can't say enough wonderful things about Dr. Dovorany and his staff.  Here's an inside look at my experience.  I will miss everyone so much!